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Sunday, 1 May 2016

I Told A Stranger That I'm Disabled

May to me is all about EDS Awareness Month. I was diagnosed with Ehlers Danlos Syndrome when I was 19, (10 years ago now, that makes me feel old) it took over six years before I received a diagnosis and there is still not enough knowledge about EDS. I wrote a whole post on my story and what exactly EDS is last year, please check it out - here.

I'm really awkward when it comes to talking about my disability, I don't know why, you'd think I'd have plenty of practice. Although I accept it, (I mean, I don't really have much of a choice) and I can talk openly about it to anyone who is interested, when a stranger asks me, 'what have you done to your leg?' or 'why're you on crutches?' I immediately start panicking, and the combination of anxiety and brain fog are not my biggest allies.

My usual response is, 'erm, well, erm, I just dislocate,' or 'erm, I'm in a lot of pain because erm, my body is, umm shit.' Who'd have thought I was a writer with a Masters degree in English - I can barely string a bloody sentence together. After I've made myself and the inquisitive stranger embarrassed and we tumble into a hole of silent akwardness, I begin thinking of all the answers I could have given. I've done this for ten years. TEN whole years. Don't get me wrong, I hate it when randomers ask me personal questions about my health, but I despise the response I give even more.

I wrote about accepting my disability - here and although I am accepting of it, I'm still a bumbling idiot when it comes to saying the words out loud.

However...Actually, can I get a drum roll, please?

On Thursday, I went to get my hair done and there was a stylist in the salon that I had never met before. My hairdresser asked if she would wash the colour off my hair and when I walked over to the sink using my crutches, the stylist turned to me, apologised and asked my favourite question, 'oh sorry, I didn't realise you were on crutches, what have you done to you leg?'

My response. And this is huge for me, was, 'I'm disabled.'

BOOM. YES. I AM DISABLED.

No choking on words, no ridiculous descriptions of pain, no playing down my shitty condition. Just, I'm disabled. Done, said, over in two words. No anxiety, no wishing I'd said something different, just a massive relief.

I came home and told Ian immediately, I was proud of myself. I'd never been able to do this before. I've admitted it to myself, I've said it in conversations to family and friends, I've told strangers in a round-about way. But this, this was a defining moment and I was more than impressed with myself.

From this day forward, that's going to be my response to any of the usual questions I get about my health.

So proud of you! It's really hard to know what to say. I'm still practicing my line of "I have a connective tissue disorder called Ehlers-Danlos syndrome that means the glue that holds my body together doesn't work properly." Before I'd figured that reply out I used to muddle through a useless answer. I often find (at lease I have with questions about my glasses) that people get embarrassed when I tell them that I'm photosensitive, or they become defensive as though I'm the one being inappropriate! I found that particularly hard when I was working in retail as I had to remain professional & couldn't retaliate with "Erm... you brought it up!" Xx

�� Sarah that's amazing! Might seem so trivial for some but it's a huge deal to be able to say it and not feel like a fart just fell out your mouth �� I call myself a deformed freak when people ask why I walk a bit funny because trying to explain exactly why my hip isn't normal ends up looking like I'm giving directions to asda in sign language. Also have to say I love reading your blog, you are such a beautiful person and inspiration to so many young women to never give up xxx

I'm so proud of you :) Admittedly I've seen from a far yours and other bloggers discussions with your disabilities, as I've never felt I could butt in with conversations, but I love hearing what you've accomplished and how it's made you feel about yourself! Keep it up you beautiful ladyyyy! Lots of love

WOO! I'm so proud of you, sweetie!! The only way I can relate is by admitting to both myself and to anyone that asks if that 'I suffer from depression'. Admission is the biggest step we have to take and you, you brave old thing, did it!! Hope you ate lots of chocolate! ;)